Was going to hold off on comments until I finished the book, but I came across some statistics in the first chapter that were very surprising to me.
“Our results showed that nearly 60% of patients with schizophrenia, about 25% of those with schizoaffective disorder, and nearly 50% of subjects with manic depression [bipolar disorder] were unaware of being ill.”
I’m a little shocked at how low the numbers for SZA are. I knew that SZA was associated with better outcomes compared to SZ, but I didn’t know that bipolar disorder was associated with anosognosia levels as high as these. Not sure what the methodology of the studies were, measurements could be at times of hospitalization. My experience is people in a manic state feel too ‘high’ to think anything is wrong, but this can change after they ‘crash’.
Anyway this could explain a lot about my level of insight and why my brother with bipolar disorder doesn’t do quite as well with his disease.
Anosognosia is like a huge insurmountable wall between the families and their family members with scz and bipolar. I hadn’t remembered that sza had much better numbers.
We still have family members show up on this forum who haven’t been told about anosognosia by their family members’ doctors.
@hope, I know my psychiatrist had never heard of this book. He’s aware of the phenomenon of course. Although my impression is he’d be less aggressive in educating caregivers unless they knew to ask questions. I think there are a few basic attitudes of mental health ‘professionals’ that the consumer and mad rights movements did not penetrate. Maybe a caregiver movement beyond the steady advocacy that goes on behind the scenes might get their attention.
Frankly, I also think the title of the book is a little weak. Not technical enough for professionals and not specific enough for lay people to understand what it is about. It belies the importance of its message.
@Maggotbrane, do you wonder if some psychiatrists have trouble differentiating between brain disorders and behaviors? Sometimes I suspect they are so into the concept of denial their eyes are closed to anosognosia as a true symptom.
Yes, I agree, the title and the cover don’t convey the seriousness of anosognosia. Plus, many caregivers have pointed out so much of his examples work well in a clinical setting - we at home need more tools.
My son wouldn’t trust me at all when I was doing everything wrong, e.g, explaining to him that the things he heard and saw weren’t real. He became quite suspicious of me.
Using the techniques I did regain his trust and the lines of communication are open again. Still not on meds, but I have a better understanding of his capabilities and the door is open on the topic of meds.
I remember how hopeful I was when I first read this book. It does offer useful and effective tools for strengthening relationships and building trust. It also gave me valuable insight about how my daughter’s perception. But it was and is a long, slow process for us. I was hoping for a quick fix. She has made leaps and bounds and we are closer than we ever were.
I remember how disappointed my husband and I were at Family to Family when they said the slightest positive change could take years.
There we were -basically a room full of parents and spouses- all of us with pens poised to take notes to get started fixing our kids/spouses. When you are new to scz you can understand how Alice felt when she went down the rabbit hole. All the rules are different here and we will all struggle to help our children and still have a life for ourselves.
In response to the part of your post where you talk about doing things the “wrong” way as far as telling your son the delusions are not real….
Does it get any easier going along with it??? I feel so exhausted and resentful that I have to live in my mom’s reality (delusions of dust which stems from a group of people who are trying to destroy her and have ruined her life)
I just hate having to live in that dust reality and this negative loop that goes on and on and on. I’m grateful that I am not experiencing the delusions myself. Watching her experience her own personal hell is hard so I can’t imagine actually being in that mind.
Do you have any advice on how to deal with going along with the delusions?
It’s not easy. I’m not wired to ‘go along’. Especially on Flat Earth, sexual pedophiles running our government, Covid vaccine microchips, 5G tower mind-control, etc.
But. I’ve tried repeatedly to dissuade my son. Starting with the more seemingly easy ones to counter. BAD OUTCOME. 100%.
So, after several fruitless attempts, I practiced LEAP. Listening and empathizing does not mean agreeing. It’s simply acknowledging that someone has legitimate feelings and that you affirm and love them.
Not arguing these delusions is very hard for me. But has also been critical in improving my daily care for my son. LEAP on!!
Alisa, can you tell me more? What does “going along with it” mean in your life? Can you tell me what is required of you? It is incredibly hard to live with a person who has delusions.
For me and my son, when I tried to let him know his delusions weren’t real, the only thing that happened was he began to distrust me. I needed him to communicate with me so I could discover what would motivate him.
When our son lived with us, we needed time away from him and his delusions. I envied my husband getting to go to work. I spent most of the day in my bedroom or out in my garden to avoid my son. Many of us need a locked door to retreat behind for peace of mind. I went back to work as a volunteer part time to get myself out more and to give my brain something else to think about.
NAMI tells us at Family to Family that we must keep our own lives up and going as a priority. Prioritizing my life and doing things I enjoyed was what finally made my life easier.
